Travelog

There are some events (meetings, conferences, vacations) that are so predictable that you can write up the historical record (minutes, proceedings, travelog) before the event concludes. On the other hand there are events which are so unpredictable or take so many unpredictable twists and turns that the final outcome doesn't resemble the initial plans at all.  I like to think my hospital stays should have been straightforward: admit, stabilize, diagnose, repair, discharge.  Here's what happened.

About eight weeks ago, I suffered an acute case of breathing distress.  Shriveled and shaking, thinking I could be on my last breath, I was wheeled into the Emergency Room where doctors and other professionals attempted to provide an airway to relieve that stress.  The combination of distress, medication, hospital procedures, and my mental state acted together to make me a difficult patient to stabilize and begin the process of diagnosis.      

A premature discharge led to a second admission, again for breathing distress.  I was finally convinced of the seriousness of my condition.  Hospital staff developed treatment alternatives that stabilized my situation and provided some long term solutions for breathing and eating.  This allowed me to be discharged again, this time with considerably more support in place.

The treatment plan continues to be developed as the current feeding by gastric tube seems a little drastic for the situation.  Likewise a diet consisting only of liquid artificial food, is less than ideal.   On the other hand, I am sleeping through the night and have had no further breathing distress.  My blood pressure, weight, oxygen intake and pulse all indicate that I'm in retiree's  paradise.

The hospital as a :__________

Each patient enters a hospital for his own reason.  For one it may be:

To die.  At one time this may have been the main function of hospitals.  Now we have alternatives like hospice;  Many people would prefer to die in more familiar settings surrounded by family and loved ones.  

To be operated on.  The hospital provides a controlled environment where surgical operations can be performed with the same precision and sterile field time and again.

To heal.  Hospital staff and volunteers feel their jobs are special because the healing process gives instant gratification.  They make a difference in someone's life.

To recover.  Recovery is accelerated to a large degree because of focused attention on the problems at hand.  Deviation from the healing process can be spotted and actions taken to counter them.

To learn.  One thinks of teaching hospitals, of course, but in a sense all the hospital patients are also students.  They learn from the procedures and processes practiced on them.

To be stabilized.  When a person's health is swinging wildly from good to bad or horrible to fine, it is difficult to treat with medicine, surgery, or alternative methods.  By the time the desired reaction may be expected, the patient may be off to another crisis.

To be born.  We mustn't forget that happiest of all the sections of a hospital, the maternity ward.  It isn't necessary to be born in a hospital but we hope there are reasons to chose that launching pad.


When I entered the hospital I felt like it was to die.  I knew it wasn't to be born.  Little did I realize just how many aspects of the hospital I would discover during my stay.

Arnold in Wonderland

Now I'm going to have to tread lightly in this area, mental perceptions and reality.  For one thing, my perceptions of the past six weeks differ from others more than I feel comfortable about (it's hard to write a story of you life when you weren't there.) and secondly, for much of my life I didn't accept the reality of non-reality.

I found books and papers on illusions and delusions to be highly entertaining but could not connect them to my reality or my firm foundation of truth being what is observed.  I believed there was an ultimate reality and that if we continued to refine our observation methods we would eventually discover this reality.  Furthermore, this reality could be shared - if I saw something it should be beyond question that you could see it, too, given enough time and equipment.

I no longer believe that is 100% true.  I have seen and heard entirely illusory evidence to the contrary.  During my hospitalization, I spoke and wrote things that are now no more than non-sense and scribbles.  I propounded marvelous arguments that, in the cold light of outside the hospital, are little more than blubbering.  My memory of an uninterrupted afternoon do not square with memory of others who witnessed a very disruptive Arnold Loveridge acting out of character.

Where do these phantom objects and guests come from? Are they coping mechanisms evolved through the ages?  Are they uniform in someway or can they be categorized?  Are they, like dreams, full of hidden meaning and open to interpretation by inspired men and women?  Or do they represent a sour pickle, spoiled milk, or a disagreeable dinner partner?  Do they have any use at all?

For example, I "learned" that a significant number of phantom images in my field of vision usually meant that I was using a large amount of creativity to make the observable "facts" fit the scenario I was experiencing.  In recognizing this, I was sometimes able to move the scenario closer to reality or terminate it entirely.  Oddly enough, to me it was comforting when we discovered that dellusions were not uncommon in Parkinson's Disease patients or that they are often created by the Intensive Care Unit.

A day of reckoning

Imagine that tomorrow morning you experience some chest congestion and coughing pain.  An hour later you are lying in the Emergency Room being told that you will never again be able to eat a regular diet.  Your meals for the rest of your life will be non-flavored liquids poured directly into your stomach through tubing surgically sewn there.  You are also told, in case you didn't know, that you are lucky to be alive and can thank your courageous wife and hard-headed kids for that.  The hospital staff should take their bows as well.

I'm interrupting my hospital narrative at this point to give some real-time information.  We began the day with 5 or 6 appointments on the calendar, knowing that a couple of them would have to be moved.  For example, I had an appointment with the head & neck surgeon at 8:30.  By the time we got there he had been called to urgent surgery.  So we rescheduled to 11:00 which was the time we were to meet with the home care speech pathologist.  She was kind enough to reschedule up to 9:30 so we could get her visit and still make it to the surgeon's office.

Speech pathologist
The speech therapist spent half her time discussing the nature of my illness as described by the report of the modified barium swallow that was done a couple of days before I left the hospital and (2) describing exercises that can help me deal with the illness.  I finally heard what some people have been trying to tell me for some time: I have a very serious, life threatening condition that may be curable or may be something I have to accept and live with by making modifications in my lifestyle.  For example, I may have to eat a liquid diet the rest of my life.  Or I may have to make a choice between a permanent tracheotomy or activities that call for heavy breathing such as biking.  The one bright note this morning is that the doctor has a couple of caps for my trache - one for showering and one for talking.  I no longer have to hold one hand to my neck to speak.

Head and neck surgeon
I expected a follow-up report on the surgeries already done including my trache (the g-tube was a different surgeon).  Instead, the doctor did another nasal probe to see the current condition of my airway.  Although the swelling had decreased significantly, there was still some in addition to the "redundant" tissue complicating things. This time the doctor recorded his scans on DVD.  He said they need to have some discussion in the department before he could make a recommendation regarding future surgery or removal of the trache.

Social worker
Another member of the Home Health Care team came to evaluate the services I need and how well along we are in meeting those needs.  She came away with the recommendation that we pretty much have all the community resources we need or have knowledge of how to access those we don't.  Case closed.

Primary Care physician
Wrapping up the team for the final appointment of the day is my primary care physician who has surprisingly little input but whose manner says it all.  Don't try to be an optimist on this one.  Even if you could learn to swallow well enough, its only temporary.  Parkinsons will catch up to  you.  And you will admit, life is still worth living.

I count my blessings.  Even with my math ability slightly impaired I know that
 (oodles & oodles)-1 still equals (oodles&oodles).  

Report Cards

When our children went to college I was a little bummed not to get a copy of their quarterly and semester grades.  Of course I could have it a condition of continued funding or housing but there was no official method of letting me know.

Of course report cards and other reporting mechanisms are not put in place to punish or reward.  They are simply part of the reporting system any managed process should have.  If something isn't measured and reported, it cannot be improved, changed, or corrected using normal management techniques.  If I don't know that one of my children is having problems with math I can't arrange help for him.  Likewise, who would want a healthcare system which gave out all sorts of advice prescriptions, and therapies but had no way of measuring the effectiveness of this effort of even how much of the ffort was used.

So it was with mixed feelings that I encountered the reporting system in our medical healthcare institutions   It is a mixed system with roots still in the "Doctor knows best" attitude. The younger, more progressive doctors like and use input from the patient and family. Where they use that input to involve the family in better and more accepted treatment plans, the patient is more likely to take prescriptions and use exercises  given.

There is also the practical matter of working with a responsible party.  I don't remember it, but I am told that during the initial part of my hospitalizations there were times when I was not only not responsible but I was actually physically threatening and certainly irresponsible.  There would have been no one for the doctors to work with in deciding MY fate.  I guess I should feel better knowing that our medical care system still cares enough, still feels patronizing enough to rat on patients - in a nice way, of course.  And for good cause, of course.

During my recent hospital stay, staff kept Carolyn updated about my progress, prognosis, prescriptions, expected therapies.  I was told who my nurse would be for that shift.

As our case managing Home Health Care Nurse was inventorying our prescribed equipment and going over all the procedures with us, she asked me whether I was "aware" of my medications.  It left no doubt in my mind as to who is reporting to whom.

My personal advance directive

So in the cool of the evening with no life threatening events immediately ahead of us, Carolyn and I complete an Advance Directive.  We are both in our late 90's.  Being the new generation we want to make sure we don't try to save each other beyond a reasonable number of times.  As the doctor bends closer to Carolyn's face so that he doesn't misunderstand her wish, Carolyn loudly answers, "Let the old Fart go.  Haven't you heard what he's been asking for the past 5 years?"

You see we picture the "Advance" part of the directive as the more important part and we place it far in the future.  When I was recently admitted to the Emergency Room, the people vying for my signature on the financial forms had their hands full getting past the ER clerks whose main interest was the Advance Directive. It was a slow afternoon and my trauma (not being able to breathe) was the best game in town.  So the whole ER staff minus those assigned to guard the doors or serve as ushers hovered around my bed while important, life altering decisions were made.  And there might have been some tense moments when a decision had to be made about whether my body was even worth keeping alive at all, not just for the 20th or 40th time.

Please don't get the idea that I want to second guess the decisions made by Carolyn and the hospital medical staff.  I probably owe my life to their making these decisions.  It's just that I'd been thinking of advance directives as pulling the plug time when it actually was used in a "damn the torpedoes, full speed ahead" fashion.  Once it was decided that Carolyn had permission and control over life and death decisions as to my mind and body, and it was explained to her that they could only work with clear cut directives (no maybe's or congressional joint resolutions) then things really went quickly.  They determined that I needed to breathe and that the best way to assure that outcome was to cut a 1/2 inch diameter hole in my neck and insert a tube that keeps the hole open.  Throughout the following days, decisions about my sleeping cycle, need for physical and chemical restraint, in general my whole life were decided.

In other words, my advance directive had been used and the direction was sure. The decisions did not come back to the table.  Of course the fact that I was no longer in a state of being able to make those decisions may have had something to do with that.

Let me be clear:

 THANK YOU, Carolyn, for making the brave decisions and commitments that allowed me to be here today.

Mark time with a puzzle, a photo, or a gala event

As I've indicated elsewhere, much of the first six weeks of 2013 are forever lost to me.  There are no deposits in my memory bank for those days and hours.  Of course one doesn't have to be hospitalized to experience that phenomenum - a boring car ride, poorly organize summer camp, or even a long conference can have the same effect.

The solution:  associate the time with a marker that can be remembered, documented and shared.

This 500 piece puzzle with the picture of a neighborhood carnival was begun when Lee came to stay with us for a week and was completed when RevaBeth and Keith visited.  And now that I have a picture of it I no longer even need the physical  pieces of the puzzle.

What markers do you use to capsulize time?

The plan, the plan, who's got the plan

It's a vague memory to be sure but I do have a memory of when life was simpler.  All you had to worry about toward the end of your life was how to write your will so that the good guys got your money and the bad guys got your bills.  Dyeing without a will was a sign of carelessness that would allow attorneys from anywhere to steal your heirs blind.

But these sorts of wills grew larger and larger to cover all contingencies.  We worried that we had missed somebody or treated someone unkindly.  And for the will to become effective and useful, you had to die. Sort of like having a gun to shoot that package of meat you just bought.  Attorneys quickly pointed out that a form predating the will, the Power of Attorney, would already take care of these items.  Specialized power of attorney documents began filling safe deposit boxes.

However, there was something more that was needed.  Upon death, your assets are frozen and your plans to support your family become another huge package of red tape.  The Living Will was developed to be a more powerful instrument   it could continue the family business, make dividing the family furniture less unpleasant, keep Sally in school, as well as assist in making final funeral arrangements.  The Living Will also became the mechanism to make family decisions regarding heroic life-saving measures, to allow the family time and space to decide when Aunt Mae's comatose body can be unplugged or how many more cardiac resuscitations we will inflict on Uncle Fred.

Soon, it became evident that the Living Will was working overtime trying to serve two masters.  People who cared about heroic life support were not really interested in the fiscal aspects of perimortal business dealings and those who were cared often felt ethically unequipped or empowered to make life support decisions. Time for another form.

Advance Directives take life support decision making away from the legal system and hand it back to the spouse, the family, a good friend.  The use of the form is good preparedness, we are told.  Make these important decisions in the cool of the day, not the heat of the moment, without the pressure from non- or less-involved family members.  And if you never need it, cool, you just tear it up.

But does it really work that way?

What's in a Name or whose zoo

Imagine waking up in a strange place, in a strange bed, surrounding by busy strangers speaking a language you don't understand.  It's no wonder that some people speak of a hospital experience as "scaring them to death".  Given the size of the city where I live, there is a pretty good chance of my doing just that.  My recent hospital stay illustrates this perfectly.  From the ER to my waking moments three days later in the Intensive Care Unit I have absolutely no memory.  A glance at the WhiteBoard posted to the wall in front of my bed, however, gives us hope that hospitals try to minimize this problem by helping patients begin to make connections.

On the Whiteboard  next to the name Arnold is the tile Wife followed by Carolyn and a number that is vaguely familiar.  With nothing else in my memory I could reasonably assume that I am a married man whose wife can be easily reached at the number listed.  Other names and numbers give me similar assurance that other friends and relatives are available.  Equally important are names of my care staff and consultants who are scheduled to meet today or tomorrow to resolve my case.

People walk in and out of my room, some without even introducing themselves or stating where they fit in my case.  All of them have a name badge around their neck identifying the person, the hospital, the department, and even the "rank" or type of employee such as rat catcher.  This indicates that this hospital takes security and confidentiality serious, an attitude that is increasingly common.   

This hospital is sort of stuck between time periods when addressing me.  Nurse and doctors usually call me by my last name as in "Good Morning, Mr. Loveridge." However, there is a trend that more and more professionals want to appear as the patients'colleagues and often call patients by first name.  Then the large number of suppot staff who will just "yes,sir" or no sir when I'm in earshot.  

Some ehinic groups have developed thei own name system which they use primarily with therapy.  I was called PaPa a lot, "Come on, Poppy", a name that I hope includes the respect due to seniors as much as it does age or familiarity.  Mr. Looooveridge, did you spill on the bed?"  "Okay, Honey, Let's walk a little."  Oh, Siiir.  You'll have to be careful tonight. Can my sweety be careful.  I just removed Sweety's catheter and gave Sweety a big sleeping pill."   Such people are interesting and talented but their speech pattern can be annoying .  

Shhhhh Hospital Zone

A relic of bygone days, the sign "Quiet Hospital Zone" would have been ignored or laughed at in my recent hospital environment.  Not only are noise regulations apparently something to be ignored, noise may be something that is used for "therapy".  How else do you explain the pervasive use of noise and noisy instruments in one of the most sophisticated work areas designed by man.

As you might expect, the equipment which has been around the longest such as the heart rate meter hias become so stereotypical that a boop-ping can't really be used for any other equipment.  Likewise a nurse's call button is modest and non-offensive.  (I was happy to find that call buttons were, in general, answered promptly by nurses who really took responsibility for satisfied customers.)

There were others, though.  One sounded like a WWII klaxon calling for overall movement to the air raid shelters.  I never did discover what it's purpose was in the hospital.  Another was a well intentioned attempt at adopting some of the Japanese ideas in public announcement.  Instead of a single ding or beep, a short 5 to 8 note tune is played.  If played infrequently this idea is a pleasant change.  However, played as frequently as I heard in our hospital, I began thinking up ways to murder composers.

Another particularly bad practice is having an alarm ring outside the area of interest.  Such an alarm annoys far more people than it helps and it contributes to the overall "temper" of the neighborhood.

But for absolute hellishness, I nominate the alarm that appeared to have one purpose and one purpose only - on-site status verification.  Taped securely to one of my fingers, it was easy to ignore - until you attempted to leave the room or even the surface of your bed.  Then, a very load horn declared your intentions to the world. Knowing their jobs and possibly even their lives depend on knowing where each patient is and that each is under control, the staff quickly block any exit attempt by  a patient to "get away".  This alarm was the first one I was hooked into on the ICU, the last one removed, and played a significant part in many of my dreams.

Restrain yourself

At times my recent hospital experience took on the feeling of a battlefield.  Sometimes it was a battle of wits while at other times it was more a  physical battle.  It was destined to be that way since my reason for coming to the ER in he first place was my struggle for a decent breath, one after another. But what surprised me was the early and then ongoing use of restraint.

I don't remember much of the admitting process.  I was spending most of my effort just getting  breath.  It never would have occurred to me that the restraint I was feeling was for my own good.

The first restraints were merely hook-ups, a connection of electrical pads, wires and monitoring machines.  With each new connection increasingly important vital signs such as blood pressure, pulse, body temperature , and blood oxygen level -  a vital link was forged between me and the hospital. At this stage, I could have severed the relationship with little pain to either party.

The second set of restraints were more invasive.  An IV (intravenous) line was inserted into one of the veins of my arm for ready access to my blood for injection of chemicals as well as collecting samples. A suction system humidified my breathing air.  A particularly noxious device known as the NG Tube (nasal-gastric) was inserted through my nose cavity assuring (and also monopolizing) an open path for delivery of food and medication. This act, also called intubation has a feel of compliance enforcement because you sure as hell don't want to undergo it more than once.  The coup de grace, an indwelling catheter was inserted through my penis into my bladder.  I could no longer pee on my own nor could I move very far from the collecting hose without serious consequences,

Restraints in the third category are definitely compliance-based physical devices - straps, jackets, mittens.  How little it takes to immobilize a grown man.  A simple 1 inch belt can reduce the range of motion from "independent" to "helpless".  These appear to be used mostly for physical manefestations of "bad dreams" or to prevent recurrence of equipment removal.  Verbal teasing and taunts were often used in conjunction with this restraint level.

Finally, there are chemical induced restraints.  This can be as simple as a sleeping pill and as extensive as combinations of blood pressure medications and psychosis inducing drugs.  We will spend more time on this more controversial category in later blog articles.

Can we talk?

I suspect that this series of blog articles will show up my ignorance and naivete as much as anything.  I just haven't had a lot of experience being in a hospital. A lot of what many of us "know" about hospitals is stereotype or script from TV and movies.  Not  a lot of people want to go through the whole inpatient process just to find out what it is like.

My latest hospitalization left me with the impression that these communication problems increase exactly when better communication is so needed.  This communications problem begins on the way to the Emergency Department (or ER) and continues even through a carefully planned discharge.

In my case, the drop in communication took a quick, drastic dive when the physician in charge decided (in consultation with my wife) that an intact airway for breathing was more important than a vocal cord system.  In a matter of milliseconds I went from a communicating, relatively equal partner in running this body of mine to a second-class silent partner now only peripherally involved with keeping my body alive while everyone else decides whether the task is worth the effort.

By the simple, quick procedure of allowing the doctor to punch a 1/2" hole in the front of my neck I lost the means to communicate with doctor, nurse, caregiver, children.  Judging from the reaction of those around me I also lost 50% of my IQ as whatever words I did manage to smuggle out were heavily discounted by outside visitors.  Now the expert on my body was my doctor, not the one who has lived in and (mis-) treated it for 68 years.  The expert on our family relationships took a sharp jump to my wife and my children leaving me in unfamiliar territory.  Even if someone insisted on hearing my side or my suggestions, the time delay reduced the value.  The topic I'm responding to is no longer current.  I open my mouth to contribute to a discussion but find it meaningless.                                                                                                                                                                                                                                                                                                                                                                 

Of course the effect lasts long past the decision point.  All of our family, friends, and business associates feel the difference. I fill up pads and pads of paper to continue to contribute in discussions finally stopping after I realize that many cannot understand my scribbling any better than my whispered mumbling.

Let's make it work this time.

Edward wrote this up so well, I'm just forwarding it on.  Love to all of you.
(Arnold -from his own bedside) 2/13/13

It is about time that I give an update on Arnold/Dad's status.  If I have forgotten anyone, please let me know.

As most of you know, Dad has been in the hospital for a little over a week for his second visit in a month.  We are not certain what is 'causing' the breathing problem, but for whatever reason he has not been able to breathe properly.  After some swallowing tests it was learned that apparently he is not able to swallow correctly and bits of various particulates will get into the lungs, which cause problems like pneumonia, not to mention the general difficulty of breathing the equivalent of a smoggy day.  To add to the problem, his body is not able to get the particulates out properly which is causing blockage and labored breathing.  Long story short, they put a tracheotomy in so that he can breathe better.  This time they are going to leave it in "indefinitely". [Arnold: I'm told that doesn't mean forever, just that the removal date hasn't yet been determined.]

Eating is now different as well.  Dad decided to go for a stomach 'peg'
rather than an NG tube through the nose.  Yes it is more invasive and more of a long term thing, but since prescription liquid diet is also now going to be 'indefinite', he felt that it was better than having a thing sticking out of his nose all the time.

All of this does mean that he will need 24 hour care now, 'indefinitely'.
Mom has hired a couple of women she has known from church to help out.  He will need help with feeding, suctioning and medications as well a minor help with things like dressing and the 'running around the house' kind of things that are hard to do when your mobility is limited.  There is a bunch of new equipment kicking around the house now.  We will probably have to give up the feelings of guilt over the amount of garbage that will now be generated (tubes, bottles, containers, wrapping, etc), but it is nothing compared to what goes on in the hospital.

Speaking of mobility, while his overall mobility is limited, once he gets walking he is a speed demon and is able to walk fairly well (using his standing walker of course), even better than the nurse thought he'd do.  As of the moment talking is a trick, but doable so long as he plugs the trach tube.  We are hoping for a special adaptor that will allow him to talk for freely.

Mom, the caregivers, Tiffany, myself and even Timothy all got trained yesterday on how to suction the trach, administering medications and food.
Timothy's words were "it was not that bad."  Pretty proud of my 13 year old for getting in there and trying it out.

Dad appears to be on a mood upswing as he is working towards coming home.
As you can imagine, coming home is always a good thing.  Only time will tell how things will be in the long run.  There are various treatments that may work to help him, but it will have be weighed against the usual things like time, pain, chances of success, invasiveness, etc.  You know, the usual.

So I think that is the latest.  Last I heard he will be taking home via medical transport or ambulance.  I think that is more of a CYA thing for the medical people; "Hey, last we touched him he had full medical support."  I think he should come home with the lights and sirens going and a blow horn going, "Now here this, ARNOLD HAS ARRIVED!"

Thanks all!

Ed

Back yet again

Yes, it's really true.  It's really me.  Arnold Loveridge, writing from the pages of Too Old to Know Better.  This entry and the next couple are likely to be really short as I try to figure out and report on what I've been doing the past three weeks.

First, current conditions and restrictions:

     Weight  195 pounds

      Blood Pressure:  136/76

      Pulse:  88

      Temp:  98.4

      No food, medicine, or water by mouth.  All by tube directly into stomach.

Major events:

Jan 4 caught serious chest cold

Jan 5 - 10 ups and downs with cold

Jan 11 - appointment with doctor, immediate admission to hospital

Jan 12 - Tracheotomy

Jan 18 - removal of Trache

Jan 19 - discharge from hospital (8 days stay)

Feb  4 - appointment with doctor, immediate admission to hospital
             intubated almost immediately, and re-trached by noon that same day. The PEG was surgically                                  implanted Fe 7 or 8.
Feb 7 -  Tracheotomy

Feb 13 - discharge from hospital (9 days stay)

Support by kids

Jan 22-26     Lee

Jan 27 – Feb 2  Natalie

Feb 3 – Feb 8   Jessica

Many, many      Ed & Tiffany

Feb 8 – 10    Steven & Lisa

Many, many, many    Carolyn